Doctors treating Neuropathy missed another serious illness

Posted by thurlibier @thurlibier, Sep 13 9:35pm

I have had diabetic neuropathy for five plus years. Recently, my legs became very weak and I was admitted to Mayo Clinic's neurology department. They did tests and could not find the reason for my weakness in walking and standing and attributed it to my neuropathy. I kept saying I didn't think it was my neuropathy but no one listened. I was discharged from Mayo and went to my primary care physician. She ordered labs which showed I had an auto immune disease. My doctor sent an urgent referral to a Rheumatologist and I have any appointment this Thursday.
The reason I am writing this is to advise very strongly not ignore the possibility of other illnesses. I and my doctors were too focused on my neuropathy.

Interested in more discussions like this? Go to the Neuropathy Support Group.

emo | @emo | Sep 13 9:52pm

Thanks for sharing this, and I’m glad you were able to get a correct diagnosis. I’m sorry it took so long.

I think you bring up a really important point. As elite as Mayo Clinic is, mistakes can still be made and sometimes I feel the systems or guidelines in place intended to guide the inquiries into potential diagnoses can be too rigid, and sometimes even the confidence or assumption that certain patients with certain conditions fit a certain profile can lead to these missed diagnoses.

I also had multiple missed diagnoses at Rochester. I had a diagnosis of small fiber neuropathy. But I also had symptoms of chronic joint pain, recurrent tendinopathies that didn’t heal in the proper timeframe, dizziness and migraines.

They concluded they had low suspicion of inflammatory (autoimmune) pain and chalked everything up to “chronic pain syndrome” and small fiber neuropathy, assuming my symptoms were related to sensitization to pain. They recommended their pain rehab program. I agreed and already knew I experienced central sensitization but it still didn’t seem right.

It turned out I had POTS and an autoimmune inflammatory arthritis in addition to the small fiber neuropathy. My local care team was right, and I guess so were my instincts that there was something more to what I was experiencing.

You’re right; it does happen. I hope now with more information you’re on a path moving forward. It’s a good reminder that we have power as our own advocates too.

Colleen Young, Connect Director | @colleenyoung | Sep 14 11:43am

@thurlibier, brava for advocating for yourself and thank you to your diligent primary care physician that ordered labls. It looks like you are on the path to finding a solution to your main health concern of weak legs hindering mobility.

Good luck with your upcoming appointment with the rheumatologist. You might find this related discussion helpful.
– Your Tips on How to Get Off to the Best Start with a New Specialist https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/

PS: The discussion and tips from members was created into this video too. Tips for patients by patients. What better advice is there, right?

marieltha | @marieltha | Sep 15 8:21am

I have had similar experiences with foot and leg pain/issues being attributed to spinal stenosis aggravating the sciatica. I had to really insist that there was something else going on with my foot. An MRI showed I had ruptured the ATTendon and had surgery to repair it. The injury would not have been as extensive to repair had the correct cause been diagnosed sooner. Sigh.